Words You Might Hear on a Cancer Journey or Rather, Hope To!

Installment 2: a bit of aftermath

Suggested accompanying sound track: I Will Survive by Gloria Gaynor

Remission or Cancer Free

I have not heard the word remission with regards to breast cancer. I hear it more with leukemia and other types of cancer. I have been told that I am cancer free. Twice. Hm. It carried more joy the first time. Being the second in the same body part, my skepticism is strong, maybe justified. My son, statistics-minded as he is, on hearing my dismay about my numbers/odds (not really justified because my numbers are objectively good, but feelings have no IQ) reminded me that all these things are “independent variables.” My limbic system isn’t buying it. Yet.


Another word I’ve heard twice now. Curiously, as long as we aren’t dead, aren’t we all survivors? It seems a very low bar with a wide range of conditions. From just hanging on by a thread or a tube, beyond suffering–morphine, to fullness of life (think: building a business, writing books, serving the community, making beautiful art, nurturing one’s family). So it is a weak word packed with powerful baggage. If survival is the goal, quality of life takes a back seat. Continuing to breathe is necessary, but who can sustain that as the only goal? Surviving leaves little room for what comes next. It does mean that one has endured very hard circumstances, not dead yet. This is good.

As for cancer, I will be surviving* for at minimum the next ten years, or until I don’t. There will be regular check up appointments, daily pills that go after every molecule of estrogen in my body, future surgery (who knew silicone implants have a shelf life?), and wondering if what they’ve told me is true; today I am cancer free. Sort of. I am not free from treating cancer. I am not free from surviving. I am not “free to go.”

*Note: I will do better than survive. I train at a gym (Power Strength Training Systems) where my favorite workout is called Thrive. Bless them richly for that title. Active cancer treatment has meant earning my survival. Now it’s time to move on to thrival.

Words You Might Hear on a Cancer Journey

Let it be noted that oncologists and their friends often use words in unusual, unfamiliar, mysterious ways unknown to the general population. “Words you might hear” will stand in as an etymological broadening of such words.

Installment 1: Radiation


Before radiation begins, there is a planning session called a simulation. No actual radiation is delivered at this time. In fact, the patient isn’t even in the actual room where radiation will be delivered. During the simulation, a cradle is created and tattoo markings are placed (see below), and the patient gets a tour of the facility. In my case, I also received a swag bag to bring every day containing a white robe (see pictorial tour) that I embellished subsequently.

First day of treatment

It isn’t really! They bring you in for another run-through (like a simulation in normal people language) to verify the setup from the simulation. I quickly re-named it the “dress rehearsal.” The bummer about this word use is that the course of treatment is specific, in my case, 30 treatments total. So the first day of treatment doesn’t count! Rude!


A cradle is used during radiation. Sounds soft and cuddly, and that would be wrong. This cradle is custom molded to the patient’s body to bolster arms and maintain the posture/position required to deliver the appropriate dose of radiation to the desired body part. They are reusable and fairly nifty. You can see an example in the photo from the pictorial tour of radiation. Mine would be at the head of the treatment table nearest the stand mixer. The cradle has markings on the outside edges used to align it with the radiation machine.


These are not beautiful artwork tattoos, but rather registration marks. No choice of colors, they’re all black. They are placed by a radiology tech after determining latitude, longitude, and flatish, stable spots that are unlikely to change from day to day. Three freckle-like tattoos go on, one on each rib cage and one dead center sternum. For the record, these remain the only tattoos I have, and were acquired under protest. They are placed with a pre-filled ink reservoir with a needle. Disposable. These three dots line up with the marks on the cradle and the lasers in the walls and ceiling of the actual treatment room (very sci-fi).  All of that ensures that the radiation beam targets exactly the same bits each day, because bodies are mushy and weird.


I thought I knew this word, but it has more meanings than I previously understood. In context, this bolus is a bit of material used to mimic skin during radiation treatment sessions. The bolus could be a gelatinous mat, similar to a reusable ice pack, room temperature. Or, as in my case, another custom-made, form-fitting bit of plastic, not reusable. Think: breastplate of righteousness and you’re on the right track. My dosimetrist preferred it because the soft one was not adhering to the skin as reliably as she wanted. Those pockets of air can burn the skin more and affect the ultimate dose. Either way, in the radiation suite, a bolus is neither swallowed nor pushed, let alone passed.


The most bizarre word, made of Greek parts with who-knows-what combining form! This word does not appear in etymology online. Help me out, Scripps Spelling Bee kids! A dosimetrist is in charge of monitoring the dose of radiation and its delivery. Like a pharmacist. She’s wicked smart because physics.  In any case, the word stuck out so I thought I’d share.


I know this word from my one and only physics class in college, which I enjoyed a good deal. Also from The Great Courses on the Higgs-Boson. My take away is as follows: particle, particle, photon, particle, field, wave, particle particle. At Lemmen Holton, radiation is delivered in a few ways. My dose came from photon radiation. Not electron, not proton. And now we have arrived at the end of my comprehension.

Less Shallow

A synonym for “less shallow” would be …. About half of my radiation treatments were less shallow. They want to radiate some skin, as cancer can recur in skin. Gotta burn that, Baby! Some lung tissue is also at risk. In pursuit of the less shallow dose, the radiation does not penetrate deeper, as the phrase suggests, but the shallower bits are not. Clearly there is wizardly magic that continues to elude me.

Radiation, Pictorial Tour

Lockers to the right, changing rooms to the left

Scheduling radiation is a trip. I chose a block of time (noon-3:00) for my usual radiation set. Each day I am given a time within that window for the next day's session. Printed on that half sheet of paper is any other appointment attached to radiation, eg: oncologist visit. I present the paper to the radiation tech who signs off or passes me off to the next agenda item. At the conclusion of the set, I trade in that day's agenda for the next day's agenda. Hence, my dance card.
I embroidered my robe. It became a conversation starter. I don’t know why I got one, but it was nice.

About scheduling. I chose a block of time (noon-3:00) for my usual radiation set. Each day I was given a time within that window for the next day’s session. Printed on that half sheet of paper is any other appointment attached to radiation, eg: oncologist consultation. I present the paper to the radiation therapist who either signs off or escorts me to the next agenda item. At the conclusion of business, I exchange that day’s agenda for the next day’s appointment. Hence, my dance card.

Wait here.

There is coffee available, but usually there is not enough wait time to bother with it. Across the corridor from the fireplace is one of four treatment suites. The bit you can see in this photo is where the techs manage what happens during radiation. They schedule patients in 15-minute blocks, meaning way too many people being treated for cancer. Everything from brain stem to bone marrow transplants, and me. They even have a way to radiate blood for transfusions so that recipients do not acquire infections from donors.

My main tech people told me (because I asked) that the mechanism that triggers this release is overly sensitive, and when it triggers, the entire department shuts down for the remainder of the day. It happens enough that my providers have experienced it. Inergen is a chemical that sucks all the oxygen out of the space.

Star Trek treatment room

As soon as I turned the corner from the alarm sign, this is what I saw. Where I’m standing there is a chair and side table to disrobe. There are lasers in the walls and ceiling that line up with the cradle* and the tattoos* on my sternum and either side of the rib cage. The table adjusts height and rotates on horizontal plane. A tech would place a bolus,* then everyone but me left the room. The only sounds are mechanical; this machine breathes as it goes about its business. There are lead “leaves” inside that adjust to shape the treatment area.

Stand Mixer

The machine also rotates as if the digital screen you see were the axis point. for 25 of the 30 treatments, I received 4 zappings, 2 energies from my left side repeated on the right side. The machine also takes x-rays every 5 treatments or so to check for any changes in the anatomy (Did I sign up for that?). I’d read Radium Girls about a year ago, not such a pretty picture! This monster has attachments too. More on that in another post. There is no radioactive material in this machine. The radiation is generated on demand electronically. A dosimetrist* monitors the photons* and the bolus* and there is math involved in magical ways that I heard but can neither reproduce or comprehend.

For our purposes here, nothing in this daily process is inherently painful. As the burns (which are cumulative) got more intense, positioning my arms above my head became uncomfortable, as skin does when it is burned and scars harden.

Words noted with an asterisk (*) will appear in a subsequent post.

All that Glitters is not Gold

Sometimes it’s silver. At the end of radiation is a beautiful, blue pot of Silver Sulfadiazine Cream, USP 1%. It is the gift of cancer leprechaun. As gold is to rainbows, and triamcinolone is to chemo, so is silver to radiation. It even shimmers in the pot. And oh, the relief!

Last Day of Radiation

In the Manner of “Good Night, Moon”

Goodbye dance card, goodbye check in.

Goodbye locker, goodbye gown. Goodbye hallway cavernous and long. Goodbye fireplace never lit.

Goodbye happy techs, goodbye signs. Goodbye stand mixer, attachments and tin.

Goodbye lasers, goodbye cabinets.

Goodbye bolus, cradle, and table.

Goodbye Dr. Kastner, goodbye Paula.

Goodbye Janice.

Thank you for taking care of me.

I don’t believe I shall miss you.

He Shall Feed His Flock

There is a baby grand piano in the lobby of Lemmen Holton Cancer Pavilion that resounds up six floors worth of cancer related offices and treatment suites. I’ve been treated on all but one of them. Usually, the automated player piano software drives the music. Unobjectionable except when it plays Sondheim (good) Send in the Clowns (seriously NOT good). But I can always, as in 100% accuracy over the last several months, tell when a real human being is playing instead of the pre-programed stuff.

Today, my favorite piano volunteer was playing a gorgeous arrangement of one of my favorite arias from Handel’s Messiah. City Chapel this fall is reading Isaiah together, the source material for this aria. “He shall feed His flock, like a shepherd. And he shall gather the lambs with his arm, and carry them in His bosom. And gently lead those that are with young.” You can look up the precise reference yourself. The

alto that sings it is rich, luscious, and the soprano soars over top of it with great hope and comfort. I’ve had a tender spot for it since cradling my baby son.

Tomorrow is treatment #30 of 30. Silver nitrate is already in my radiation kit bag.

Today, all this is difficult to bear.

Radiation Tidbit

Today’s treatment was the second of five more-focused radiation doses aimed at the tumor site. They’ve added an attachment to the machine that brings the field much closer to me and put in a nifty square of metal with a round hole cut out (where the radiation will pass through). I’m told it’s my daily BLT with cheese, being made of Bismuth, Lead, Tin, and Cadmium. These metals have a low boiling point and can be melted and reused for another poor radiation-receiving soul. Only one shot of this type instead of the four I’ve been getting until now.

Oh, and the elevators at Lemmen Holton are now both working.  I cannot over-emphasize what wondrous news is this! Seems a small thing. It isn’t.

–Book of Cancer Radiation 24:30 JABV

Radiation #21 of 30

I have quite a lot to say regarding radiation, not all of it horrible. In fact, quite a bit of the experience is fascinating.  But given the context, I am having a hard time choosing a starting point. Today marks 70%  done with treatments and while the burns are seriously bad, it could be worse (perhaps more on that in another post). I can barely tolerate clothing, and comfort measures are limited, because the best stuff would scatter radiation all over the place. Think of a sunburn from sternum to arm pit with the most severe bits being at the bra line and on all the scars from surgery. Aloe has stopped being helpful. Aquaphor (like a petroleum jelly) is moderately helpful, more important for maintaining skin hydration than for pain management.

I’m healing well from the hysterectomy, still on lifting restrictions (doubled down from radiology not wanting that arm stressed anyway). No doing laundry for me! Really, you local folks, do call before visiting because clothing….

All in all, radiation is still better than chemo. I am emotionally worn out. I miss managing my kitchen, I think. Maybe I don’t. As of Monday, my fledgling adult children will both be back at U of M for the year, and so it goes. Meanwhile, could I ask for a Benison family greeting in lieu of hugs: index finger high fives (think Sistine Chapel Adam/God). That’s as much touching as I’m able to manage right now.

On tap for July

I have finished chemo treatments! Now I’m waiting for side effects to subside, including tiredness and mild neuropathy (numb feet, sometimes painful). As a method of keeping one alive, I suppose chemo must work or they wouldn’t do it, but only the desperate should attempt it.

Yet to come this month, radiation will start with a “simulation” in which the machines are set up and my person is tattooed with marks for lining things up. Then I will start the course of 30 treatments. That means 5 times a week for 6 weeks. We expect that to begin around July 22 if all goes as planned. Fatigue and skin problems at the site are the big nasties with radiation.

In the meantime, hysterectomy is scheduled for July 17. Recovery is not too bad, no lifting (even laundry) for 6 weeks with no gym for 8 weeks given the type of gym I will resume ASAP. I am grateful to have it overlap the radiation, to compress the inactivity. I do have some physical therapy on offer, and that particular therapist will serve me very well restoring me to the life I’ve lost touch with since March.

This week I shaved what remained of the hair. It was still coming out and very patchy. Clean slate, no purple dye etc. We’ll see what comes back.

Breast Cancer, Part the Second

HR+, HER2- for those keeping score

In February, my regular post-cancer checkup began a cascade of new “chief complaints.” I am once again a cancer patient, and this time, chemo and radiation are both part of the treatment plan.

Last month I had a lumpectomy which is healing very nicely. It’s really been the easiest surgery I can ever remember having. Happily, the tumor was quite small this time, and all the margins and lymph are clear. However…

There are many appointments to come. Chemo itself will have at least two preliminary appointments (that I know of), then 4 treatments separated by 3 weeks, totaling a 3-month course. Radiation will commence two weeks after chemo is resolved. That will be 5 days a week for six weeks. After all that, they will readdress hormone interventions with Aromatase Inhibitors (maybe it will diminish my sense of smell? Jim is hopeful) and whatever else needs to happen in order to allow those drugs to be used.  It’s complicated but a problem for 5 months from now.

“How can I help?”

I’m glad you asked.

I would like to have many inputs of joy. Please share with me moments of joy in your daily life (even just one time). I would like emails, texts, responses on this blog, cards via snail mail, you name it.  Words or pictures, fun music links you’re enjoying. But let them be from you – not memes. Please remember I am unlikely to respond to some or most of these for what I hope are obvious reasons, but they will be appreciated.  I will try to put out updates periodically on this blog, as I am able and have something to say.

As for more practical/tangible help, we will have to see how things develop.  I have learned that different people react differently to these treatments, so whether I will need help with food or transportation or something else is unknown at this time.

“How can I pray?”

I’m glad you asked.

There are numerous side effects on tap for the remainder of my treatment plan, all of them unpleasant. Of most concern to me right now is neuropathy (nerve pain) in fingers. I am quite dependent on my hands to cope with stress and the world in general.

Fatigue/sleep. I am not sleeping well.

I am sad about my workout routine getting clobbered. It has helped a great deal with pain and stress. Surgery has already interrupted it and will interfere more.


This is a journey I did not want to repeat, let alone repeat with the added complications of chemo and radiation.  But, I am here and so I will soldier on.  Thanks for caring with me and for me.